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Self-management needs, strategies and support for sickle cell disease in developing countries: a scoping review protocol

Por: Druye · A. A. · Boso · C. M. · Amoadu · M. · Obeng · P. · Nabe · B. · Kagbo · J. E. · Doe · P. F. · Okantey · C. · Ofori · G. O. · Opoku-Danso · R. · Agyare · D. F. · Osei Berchie · G. · Owusu · G. · Nsatimba · F. · Abraham · S. A.
Introduction

Sickle cell disease (SCD) poses a significant global health burden, particularly affecting individuals in developing countries with constrained healthcare resources. While research on self-management in the context of SCD is emerging, it has predominantly focused on primary studies, and there is a notable dearth of evidence synthesis on SCD self-management in developing countries. This scoping review aims to identify and map self-management needs of individuals living with SCD, the strategies they employed to meet those needs, and the support systems available to them.

Methods and analysis

The review will be conducted following the Arksey and O’Malley’s (2005) 29 framework to comprehensively examine the landscape of SCD self-management research. Searches will be performed in PubMed, Scopus, Embase and Dimensions AI, with additional searches in other databases and grey literature. Indexed literature published in English from inception to January 2024 will be included. Reference list from included studies will also be searched manually. Two teams will be constituted to independently screen titles, abstracts and full text against the eligible criteria. Data will be extracted from included studies onto a customised data extraction form.

Ethics and dissemination

Ethical approval is not required for this review due to the fact that it synthesises information from available publications. The findings will be disseminated through publication in a peer-reviewed journal. Also, the findings will possibly be presented at relevant international and national conferences. This protocol has already been registered with the Open Science Framework. The study characteristics such as design and setting will be descriptively analysed and presented as graphs, tables and figures. Thematic analysis will also be conducted based on the study objectives and presented as a narrative summary.

Time to tuberculosis development and its predictors among HIV-positive patients: A retrospective cohort study

by Abraham Teka Ajema, Yilkal Simachew, Meiraf Daniel Meshesha, Taye Gari

Objectives

To assess the incidence and predictors of time to Tuberculosis (TB) development among Human Immunodeficiency Virus (HIV) positive patients attending follow-up care in health facilities of Hawassa, Ethiopia.

Methods

We conducted a retrospective cohort study from April 1–30, 2023. A total of 422 participants were selected using a simple random sampling method. Data was collected from the medical records of patients enrolled between January 1, 2018 –December 31, 2022, using the Kobo toolbox. We used Statistical Package for Social Studies (SPSS) version 26.0 for data analysis. To estimate the duration of TB-free survival, we applied the Kaplan-Meier survival function and fitted Cox proportional hazard models to identify the predictors of time to TB development. Adjusted hazard ratios (AHR) with 95% confidence intervals were calculated and statistical significance was declared at a P-value of 0.05.

Results

The overall incidence rate of TB among HIV-positive patients was 6.26 (95% CI: 4.79–8.17) per 100 person-years (PYs). Patients who did not complete TB Preventive Therapy (TPT) were more likely to have TB than those who did (AHR = 6.2, 95% CI: 2.34–16.34). In comparison to those who began antiretroviral therapy (ART) within a week, those who began after a week of linkage had a lower risk of TB development (AHR = 0.44, 95% CI: 0.21–0.89). Patients who received ART for six to twelve months (AHR = 0.18, 95% CI: 0.05–0.61) and for twelve months or longer (AHR = 0.004, 95% CI: 0.001–0.02) exhibited a decreased risk of TB development in comparison to those who had ART for less than six months.

Conclusion

The incidence of TB among HIV-positive patients is still high. To alleviate this burden, special attention should be given to regimen optimization and provision of adherence support for better completion of TPT, sufficient patient preparation, thorough clinical evaluation for major (Opportunistic Infections) OIs prior to starting ART, and ensuring retention on ART.

Beating the empty pelvis syndrome: the PelvEx Collaborative core outcome set study protocol

Por: PelvEx Collaborative · West · West · Drami · Denys · Glyn · Sutton · Tiernan · Behrenbruch · Guerra · Waters · Woodward · Applin · Charles · Rose · Pape · van Ramshorst · Mirnezami · Aalbers · Abdul Aziz · Abecasis · Abraham-Nordling · Akiyoshi · Alahmadi · Alberda · Albert · And
Introduction

The empty pelvis syndrome is a significant source of morbidity following pelvic exenteration surgery. It remains poorly defined with research in this field being heterogeneous and of low quality. Furthermore, there has been minimal engagement with patient representatives following pelvic exenteration with respect to the empty pelvic syndrome. ‘PelvEx—Beating the empty pelvis syndrome’ aims to engage both patient representatives and healthcare professionals to achieve an international consensus on a core outcome set, pathophysiology and mitigation of the empty pelvis syndrome.

Methods and analysis

A modified-Delphi approach will be followed with a three-stage study design. First, statements will be longlisted using a recent systematic review, healthcare professional event, patient and public engagement, and Delphi piloting. Second, statements will be shortlisted using up to three rounds of online modified Delphi. Third, statements will be confirmed and instruments for measurable statements selected using a virtual patient-representative consensus meeting, and finally a face-to-face healthcare professional consensus meeting.

Ethics and dissemination

The University of Southampton Faculty of Medicine ethics committee has approved this protocol, which is registered as a study with the Core Outcome Measures in Effectiveness Trials Initiative. Publication of this study will increase the potential for comparative research to further understanding and prevent the empty pelvis syndrome.

Trial registration number

NCT05683795.

Health service factors affecting the COVID-19 vaccination campaign in a Ghanaian metropolis: A qualitative exploratory study

Por: Abraham · S. A. A. · Amoah · J. O. · Agyare · D. F. · Sekimpi · D. K. · Bosomtwe-Duker · D. · Druye · A. A. · Osei Berchie · G. · Obiri-Yeboah · D.
Objective

The study sought to explore the perspectives of vaccinators on the health system factors that impacted the COVID-19 vaccination campaign.

Design

The study employed an exploratory-descriptive qualitative design. Key-informants’ interviews were conducted using semi-structured guide to gather the data. Thematic analysis following the steps of Braun and Clark was conducted using ATLAS.ti software.

Setting

The study setting was the Cape Coast Metropolis where the Central Regional Health Directorate is located. The Directorate initiates and implements policy decisions across the region. It is also the only metropolis in the region that recorded about 5970 of the total COVID-19 cases recorded in Ghana.

Participants

Eleven vaccinators who had been trained for the COVID-19 vaccination and had participated in the campaign for at least 6 months were purposively sampled through the Regional Public Health Unit.

Results

Four themes were derived from the data after analysis; ‘vaccine-related issues’; ‘staffing issues’; ‘organising and planning the campaign’ and ‘surveillance and response systems’. Subthemes were generated under each major theme. Our results revealed the health service promoted the COVID-19 vaccination campaign through public education and ensured access to COVID-19 vaccines through the use of community outreaches. Also, the health service ensured adequate logistics supply for carrying out the campaign as well as ensured vaccinators were adequately equipped for adverse incidence reporting and management. Dissatisfaction among COVID-19 vaccinators attributed to low remuneration and delays in receiving allowances as well as shortfalls in efforts at securing transportation and a conducive venue for the vaccination exercise also emerged. Other challenges in the vaccination campaign were attributed to poor data entry platforms and limited access to internet facilities.

Conclusion

This study highlights the health system’s strategies and challenges during the COVID-19 vaccination campaign, emphasising the need for critical interventions to prevent low vaccination rates.

'It was a joint plan we worked out together. How the I-WOTCH programme enabled people with chronic non-malignant pain to taper their opioids: a process evaluation

Por: Nichols · V. P. · Abraham · C. · Eldabe · S. · Sandhu · H. K. · Underwood · M. · Seers · K. · On behalf of the I-WOTCH team · Sharisse · Shyam · Lauren · Katie · Dawn · Furlan Andrea · Kirstie · C Paola · Ranjit · Andrea · Dipesh · Jennifer · Anisur · Jane · Tang Nicole · Stephanie
Background

The Improving the Wellbeing of people with Opioid Treated CHronic pain (I-WOTCH) randomised controlled trial found that a group-based educational intervention to support people using strong opioids for chronic non-malignant pain helped a significant proportion of people to stop or decrease opioid use with no increase in pain-related disability. We report a linked process evaluation of the group-based intervention evaluated in comparison to a usual-care control group that received a self-help booklet and relaxation CD.

Methods

We interviewed 18 intervention facilitators, and 20 intervention and 20 control participants who had chronic non-malignant pain and were recruited from general (family) practices in the UK. Quantitative data included change mechanism questions on the trial questionnaires which explored motivation, expectations and self-efficacy. Fidelity was assessed by listening to a sample of audio-recorded group sessions and nurse consultations. Quantitative and qualitative data were integrated using ‘follow a thread’ and a mixed-methods matrix.

Findings

Four overarching themes emerged: (1) the right time to taper, (2) the backdrop of a life with chronic pain, (3) needing support and (4) the benefits of being in a group. Delivery fidelity was good, adherence (83%) and competence (79%) across a range of intervention groups. Staff delivering the intervention found three typical responses to the intervention: resistance, open to trying and feeling it was not the right time. The group experience was important to those in the intervention arm. It provided people with a forum in which to learn about the current thinking about opioid usage and its effects. It also gave them examples of how feasible or personally relevant coming off opioids might be.

Conclusion

The process evaluation data showed that the I-WOTCH intervention was well delivered, well received and useful for most interviewees. Being ‘the right time’ to taper and having support throughout tapering, emerged as important factors within the context of living with chronic pain.

Trial registration number

ISRCTN49470934.

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